“Matt was the man in charge of our relationship,” says Hayley Smith matter-of-factly. It’s been two years since her husband Matthew Smith died of cancer, and she’s still dealing with the unraveling threads of his digital legacy.
Hayley, now 33 and the same age when Matthew died in 2021, says: “When you’re dealing with someone’s death you suddenly find yourself being asked for every document under the sun.” “And it was all in Matt’s emails.”
The problem was that after losing her husband, she couldn’t remember her password. He had to guess by changing the numbers until he finally found the right combination.
“It wasn’t a pleasant feeling to then have to go through all his emails,” says a charity worker from West Lothian.
The couple had been married for just a year and three months when hedge fund settlement manager Matthew was diagnosed with stage 4 glioblastoma in July 2016, aged 28.
While he initially responded well to surgery, chemotherapy and radiotherapy, scans in April 2020 showed his tumor had started to grow again and in October 2020 he was told he had a year to live.
His decline was rapid. Matthew began having epileptic seizures. His speech impressed and the couple would struggle to fully discuss the details of Matthew’s online presence, even if Hayley had considered it.
She was eventually admitted to the Marie Curie Hospice in Edinburgh, where she died on 7 October 2021, aged 33..
“Even though I knew Matt was going to die, it was never something that crossed my mind. Then I thought, ‘Oh great, how do I turn off her social networks?’ I thought.”
This is a problem that didn’t exist 20 years ago. What will happen to our Facebook, Twitter, Instagram and TikTok accounts when we die? Should we make a plan now or risk leaving the decision about our digital legacy to our loved ones after we are gone?
For Hayley, the digital admin tsunami was upsetting, but knowing the key to unlock Matthew’s phone made things easier. “Everything I had to cancel was so stressful. Most of our joint bills were in his name, our Netflix, even our Nectar card. I had to cancel the phone contract. Most of these places don’t know how to talk to a grieving person. I’ve had some pretty distressing phone calls.
Hayley remembers trying to cancel the Sky contract in Matthew’s name. “I was explaining that I was now a single person and couldn’t afford the bills, but even then they were still trying to sell me things.”
problem on facebook
Matthew also had investment portfolios and they were all in apps and Hayley needed to figure that out. “It took me about a year to get most of it sorted.” But there remains one part of his digital legacy that he has yet to get under control: Matthew’s Facebook page.
“I still haven’t managed to deactivate Matt’s Facebook or turn it into a memorial page. I tried uploading the death certificate 10 times but it never changed. I don’t know if there is something wrong with the browser I’m using, but it doesn’t seem to work.
“I don’t have the energy to chase Facebook. “I’m so busy with my work that I’m still processing my pain, I don’t want to have to sit around and engage with them.” As a result, she often sees upsetting messages popping up on her feed.
“Some people don’t realize he’s dead. I’ve been pretty vocal on social media, but there are people who haven’t been on social media in a long time and are still writing him ‘Happy Birthday.’ You see this pop-up and it’s terrible.”
The experience of losing Matthew caused her to think about her own digital legacy. Hayley has appointed her two sisters as power of attorney and even has a “if Hayley gets hit by a bus” file at work.
He recommends that more people consider passing on information about their digital lives to family or partners to be read in the event of sudden death.
“We don’t want the worst to happen to us, but you don’t know what will happen. It’s a scary thing to think about, but it’s necessary. “If you suddenly can’t make decisions for yourself, it makes everyone’s life easier.”
Sarah Stanley is a Marie Curie nurse and expert on digital legacy issues for the charity. He says: “When you think of digital legacy, people tend to think straight to social media, but our mobile phones actually hold so much information about us. They are now our cameras and we store so much on them that they could be lost when we die.”
Having lost two families during the Covid pandemic, he has direct experience of how distressing a locked phone can be. “We don’t necessarily print photos like we used to. Many people also use facial recognition or fingerprint recognition.”
‘Make sure to take the fingerprints of your loved ones’
He urges everyone to consider how they might want to ensure their own family memories are not lost. “It could be reviewing photos on your phone and making sure you have prints of some of your favorites.”
Digital legacy is something Marie Curie increasingly talks about with the people they support. Questions they ask people to consider include whether they want friends and family to have access to their photos or posts after they die, whether important documents should be kept in email folders that others might need, and whether there is a dedicated email folder. Information they don’t want their family or friends to have access to.
“The conversation is rapidly moving and growing,” says Stanley. “And that’s something we need to start thinking about more.”
Making a plan for all the different online accounts you have is the first step. It’s important to know your options when it comes to social media. Want to memorialize an account so that your timeline and pictures are visible to your friends, but no one can make changes to it?
It is also possible to set an Old Contact on Facebook – A person who has the authority to manage your account but does not have the ability to create new posts or read your messages. You can choose to deactivate it or permanently delete it so that its content no longer exists. Although this may be the last thing on the dying person’s mind, it helps those left behind to think about the matter and, if possible, discuss what their wishes would be.
“The things you have to do after someone dies are incredibly stressful. It’s all your responsibility and it’s really hard,” says Hayley. She says Marie Curie was a huge support both during Matthew’s illness and since.
Hayley was not referred to Marie Curie until July 2021. Before that, She was looking after Matthew alone at home while she was still working. Marie Curie arranged day and night visits, putting him in touch with local palliative care services with which he had not previously contacted. The support she and Matthew received inspired Hayley to start working at a children’s hospice in Scotland.
“I don’t know where I would be without Marie Curie, they were phenomenal,” he says. “Everyone perceives grief very differently, but talking about digital legacy, making a plan today means you can save your loved ones from heartache when you’re gone.”
Marie Curie is one of four charities supported by this year’s Telegraph Christmas Charity Appeal. Others are Go Beyond, Race Against Dementia and the RAF Benevolent Fund. To donate please visit telegraph.co.uk/2023appeal or call 0151 284 1927